Jump to content

Leaderboard

  1. justashell

    justashell

    Mega Poster!


    • Points

      2

    • Content Count

      7,804


  2. radtravler

    radtravler

    Over 2000 Posts


    • Points

      1

    • Content Count

      2,572


  3. LoneWolf

    LoneWolf

    Long-time Board Member


    • Points

      1

    • Content Count

      80


  4. MaryO

    MaryO

    ~Chief Cushie~


    • Points

      1

    • Content Count

      7,468


Popular Content

Showing content with the highest reputation on 06/19/2020 in all areas

  1. Thank you so much for sharing your dad's story, Andy. What a sad, difficult one it is. I know when Dr. Cushing was originally testing people for Cushing's disease, he found some of his early patients in the circus (bearded woman, etc) and other patients have been in mental wards before their diagnosis. This disease, especially untreated, can really cause havoc in all aspects of a person's life. I hope you and your family have been able to find some peace since the original article.
    1 point
  2. Family's Despair over Rare Disease Exclusive By Benjamin Parkes THE family of a Chippenham man who died of a rare hormonal disorder have told of the despair his illness caused before it was diagnosed. An inquest held in Flax Bourton on Tuesday ruled that John Goacher, 51, of Stonelea Close, died of natural causes on May 18 last year, after having surgery at Frenchay Hospital in Bristol. The operation was intended to ease the symptoms of Cushing's Disease, which included obesity, a rounded face, increased fat around the neck and thinning arms and legs. Cushing's is a disorder that
    1 point
  3. Unfortunately a 4:30 pm cortisol test can't be used to diagnose or exclude Cushing's. The only useful blood measurement for cortisol would be a midnight one. You really need to do a 24 hour urinary cortisol test.
    1 point
  4. How sad. He never got to know life after Cushings, either.
    1 point
  5. Thanks for posting this Robin. The poor unfortunate man and his family - it is dreadful. And so very descriptive - makes you wish you could have been there for him to help.
    1 point
  6. Boy Oh Boy this one scares the H- E DOUBLE TOOTHPICKS out of me, it hits so close to MY home! Lisa I think I will wear the Xtra gear this week!
    1 point
  7. Thanks for sharing this story Robin. Kinda tugs on the ol' strings doesn't it.
    1 point
  8. MK---I think things are much the same way here---the doctor's look for the obvious---and just treat the symptoms---which doesn't always save any of us money...sadly, some pay with their lives---as you've indicated. Healthy people are productive people---that should be what we're aiming for...not trying to save a nickel...
    1 point
  9. Thanks for sharing this story... although it is so sad!! Especially when we know something could have helped this man so much sooner. Thanks for sharing!! I guess even though these stories are awful to read, they spread awareness... which is exactly what we need... Paige
    1 point
  10. Man oh man . . . . . when will they ever get it. It is so sad and scary to read of such a tragedy. And to read his symptoms . . . . . boy does that hit home. Thanks for posting Robin. Amy
    1 point
  11. Wow, What a heart wrenching story. I think we all must have a double dose of empathy when we read about the trials of another cushings patient. I agree that publishing the story will really help raise awareness. It also makes me even more resolved to fight and encourage others to fight diligently to get a diagnosis and treatment plan as soon as possible!!!! Time is not our friend with this disease! Gina
    1 point
  12. This must be so devastating for his family, but I'm glad they are bringing this disease to public view. It makes me more thankful that I saw a GP who was able to put all my symptoms together & immediately referred me. This is not always the case over here. Most GP's treat symptoms, they do not look for an underlying cause, that's the way it is over here, they are constantly under pressure to reduce the costs to the NHS, so any referral to a specialist has to be for a DAMNED GOOD REASON! For diagnosis they look for the lowest common denominator, this goes for all diseases, the simp
    1 point
  13. NOT that it would help this family, per se, but my advice would be to SUE SUE SUE SUE SUE -- if only to hold his former doctors responsible for their negligence. If we keep taking a passive approach, then there will NEVER be any accountability to properly test for this disease when the symptoms are right there in front of the noses of so many prior medical professionals! I am not suggesting anything I don't plan to do myself. If my own lawsuit will force this one single repro-endo practice to more aggresively test (or at least refer out) potential Cushing's patients, then it will save li
    1 point
  14. Robin--- What a heart-breaking experience for the family to have to endure---but how courageous of them to share it with others. One of the passages---"He used to say he felt like he was in a bubble where everything he did inside it seemed to be normal but to everyone outside the bubble he appeared to be losing his mind." really hit me like a ton of bricks---this is the best description of something that happened to me a couple of times... If and when I ever get a diagnosis, I'm sending a copy of this article to my "former" doctors, who did not and could not help me w
    1 point
  15. Hi everybody! I am Andy Goacher (John Goacher's eldest son) The article itself is particularly badly written if I'm honest, so I would like to share my own account.. Dad was a kind, gentle man, incredibly gifted, logical, technical. A senior reliability engineer working rocket and missile systems... "Basically our father is a rocket scientist" me and my brother would joke.. He had been gaining weight and suffering health problems for some time before he got really ill. He ballooned a bit in his final years, but facially and in the abdomen as well as a fatty hump between the
    0 points

Announcements

×
×
  • Create New...